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Understanding the lived experience of Latino adolescent and young adult survivors of childhood cancer

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Abstract

Purpose

The purpose of this study was to investigate the experience of surviving cancer for Latino adolescents and young adult (AYA) survivors of pediatric cancer.

Methods

Using a phenomenological approach, this study focused on the experience of cancer survivorship through in-depth interviews with 14 Latino AYA survivors (16–29 years) diagnosed as young children (0–15 years) and at least 1 year post-treatment

Results

Four essential themes about the Latino AYA experience as childhood cancer survivors emerged from analysis: borrowed strength of family and hospital staff; sustained positive attitude; perceived vulnerability; branded a cancer survivor. According to these participants, the lived experience of surviving cancer was predominately positive. These emerging adults were able to focus on the positive lessons learned from their cancer experience such as the importance of personal relationships and an optimistic outlook on life. Yet, it was clear that long after these survivors had been labeled “cured” by the medical team, cancer continued to be a large part of their existence.

Conclusions

The results indicate that these emerging adults faced their cancer experience with optimism, leaned on relationships with family and health care professionals, and demonstrated resilience through their cancer treatment and beyond.

Implications for Cancer Survivors

This unique description of Latino survivors' experiences demonstrates that they simultaneously face uncertainty and identify positive influences of the cancer experience in particular unwavering familial support. These findings provide opportunities for health care providers to better understand this rapidly growing population and to create culturally resonant programs that can promote their long-term health and well being.

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Abbreviations

NCI:

The National Cancer Institute

PTSD:

Post-traumatic stress disorder

AYA:

Adolescent and young adult

UTHSCSA:

University of Texas Health Science Center San Antonio

PI:

Principal investigator

SES:

Socioeconomic status

QOL:

Quality of life

HRQOL:

Health-related quality of life

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Acknowledgments

The authors wish to acknowledge the invaluable support of the UTHSCSA Children's Cancer Survivorship Program, The American Cancer Society Offices, San Antonio and the adolescents and young adults who have survived cancer and are willing to share their experiences to help others. This project was supported by a Research Grant from The University of Texas at Austin Office of the Vice President for Research.

Author Disclosure Statement

The authors declare that they have no conflict of interest

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Correspondence to Barbara L. Jones.

Appendix A

Appendix A

Interview Guide

  1. 1.

    Tell me about how you first learned of your cancer?

  2. 2.

    What does “survivorship” mean to you? How would you describe your experience of surviving cancer?

  3. 3.

    What are your biggest concerns or worries regarding being a “cancer survivor”? What is or would be helpful regarding these issues?

  4. 4.

    What do you feel your biggest strength is? What do you feel your biggest struggle is? Do you feel either are a result of your cancer experience? How so?

  5. 5.

    During your experience with cancer, where did you go for information and advice about…?

  6. Understanding you diagnosis and prognosis?

  7. Treatment and side effects?

  8. Pain management?

  9. Emotions?

  10. Relationships?

  11. 6.

    How do you share your cancer experience with friends? Boyfriends or girlfriends?

  12. 7.

    Family often plays a big role in our world. Are their family members that helped you or not in your experience of surviving cancer?

  13. 8.

    Anything else that you would like to tell me?

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Phillips, F., Jones, B.L. Understanding the lived experience of Latino adolescent and young adult survivors of childhood cancer. J Cancer Surviv 8, 39–48 (2014). https://doi.org/10.1007/s11764-013-0310-x

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  • DOI: https://doi.org/10.1007/s11764-013-0310-x

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